Youtube Video "Rare But Strong Together"

Watch our video about the Marshall-Smith Syndrome on youtube. Subtitles in many languages!

June 2013; it was again a wonderful Family Event!  Next event expected in 2015, we will keep you informed.

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20150920 mss family event 2015 805 bewerktA great weekend in September 2015! From 18-21 September, the fourth MSS Family Event has been organized in Valkenburg, The Netherlands. Families from the USA, Spain, Ireland, France, Israel, Germany and the Netherlands had a beautiful weekend. A lot of time for contact between families with MSS-children.

For the children, there was a beautiful musicprogram. On Saterday, first results of the MSS Research program were shared with the families. And also the MSS Standards of Care have been presented. Also, there was a workshop about communication.

And there was enough time to relax: a mountainbike challenge for the dads, a creative experience for the moms.

 

 

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